J2 Predictive testing for huntington’s disease (HD) on those under 18 years: the UK experience 1994–2015

Background A consistent feature of predictive testing guidelines for HD has been recommendations not to undertake predictive tests on those Aims To identify the extent of predictive testing on minors between 1994–2015 and, where possible, identify the reasons for undertaking the predictive test on a minor. Methods The UKHPC database was inspected for the number of predictive tests on those Results There were 9616 tests on the database with 9466 having an age of testing recorded. 63 tests were reported on those Conclusion This study documents the extent of HD testing of minors in the UK and suggests that, in general, the recommendations are working. Exceptions are being made and we provide some empirical evidence as to reasons why clinicians have chosen to depart from the recommendation not to test minors. We do not advise changing the recommendation but suggest that testing of minors continues to be monitored.